Interview AN12

Age at interview: 37

Brief Outline:

Second child born with Down's syndrome after low chance nuchal scan results, and nothing detected at 20-week scan. Home birth. Daughter now aged two.

Background:

Children' 2 (aged 5 and 2), Occupation' NCT teacher, Marital status' Married.

Having blood tests and other kinds of screening is treated as routine.

We hadn't really discussed what screening we would have. The first, with my first child I had what was on offer, which was the 20-week scan, and that was it basically. I probably had AFP [alpha-feto protein] blood tests, various things like that, but I don't know that I was actually aware I was actually being screened, because it is just what you do.

She paid for a nuchal scan after a previous miscarriage. The result was reassuring.

We ended up, I ended up having a 12 week scan with the nuchal fold, this time. The reason for that was because I'd had a pregnancy in between, and I'd gone for the scan the pregnancy in between and the baby had died. I hadn't been aware that the baby had died, and I'd had to go in for a D&C and stuff. And that wasn't particularly pleasant, so I was a bit anxious with my - well, it was my third pregnancy of my second child - that everything was all right. 

And so in fact I went for an 8 week scan and a 12 week scan with the nuchal fold, because I was really quite anx-, I was very anxious that the baby was all right and everything was okay. So in actual fact I didn't have, I didn't actually choose to have the nuchal fold scan. I had the nuchal fold done, because that's what you have done if you pay for a scan at 12 weeks. But what I wanted was to see the baby alive and kicking, basically.

Because her nuchal scan results reassured her she was low risk, she never expected her baby would have Down's syndrome.

So you came away feeling....?

Yeah, felt great. Thought, yeah, that's very positive. I mean, I was never really worried about it. Before, it's not something, that, to be honest, I'd really spent a lot of time thinking about, because I think I was, I'm a very positive person and I tend to think, 'Oh' - this sounds awful - but at least, 'It wouldn't happen to somebody like me.' And I've just led a bit of a charmed life and, do you know what I mean? I just expect the best until the worst happens. 

So although we'd sort of talked about it, I hadn't really - oh, I suppose, as well, I was more concerned that the baby was alive and everything, and that, so that was more important, really. But it was, getting the results of those scans, the scan, I did think, "Oh great," you know? 'That's one thing less to worry about', really. 

And the fact that it was so much higher than my risk could be for my age, although it's a risk, the mathematics in your mind, with the statistics, thinks, 'Well, if my risk for my age was - I can't remember what it was - but one in three or four hundred - and this is my risk, then, you know, that's a pretty sure-fire guarantee that there's not going to be anything wrong with my baby.'
 

Their daughter's Down's syndrome was not formally diagnosed for two weeks after birth, but the mother had already wondered about it.

And as soon as she was born, you know how you just think, 'Mm, I'm not sure that everything's all right.' Because to start off with, she was a week late and she was just over six and a half pounds. Now bearing in mind we're both big. My son, who was my first, was on time and was nearly nine pounds. 

That's, little alarm bells started to ring then. And she, she was as skinny as a rake. She - oh, she looked awful. She was like a little Sainsbury's ready, oven-ready chicken. She looked awful. And she, her skin was all peeling, so she looked like a, like post-mature, but in actual fact everything else about her was sort of very premmy, like she was premature, which I knew she wasn't. 

So just a couple of things didn't add up. And the two midwives who were here I think obviously twigged straight away, but of course they're not allowed to say anything to you. And because I wasn't in hospital they couldn't then go and get the consultant to have a look and have a discussion with me. 

So anyway, they were sort of faffing round saying, 'Oh, make sure you keep her warm, and oh...' And then they sort of went away and left us on our own. And then I said to my husband, I was looking at her and I said, "Hmm. Don't you think she looks a bit like she's got Down's syndrome?" and he said to me, "Oh, what a horrible thing to say. They all look funny when they're born." And we didn't really think anything more of it. 

And then she had - because she was at home, again, she didn't have her checks until, she was born on the Friday and that was the Sunday. And of course the woman came to do her checks and she failed practically everything, because she didn't have the grasp ref-, she didn't have a lot of the reflexes. She had clicky hips, you know, it was - oh, it was, she was just a complete failure. And so she said, 'Oh, I'm going to get your GP to come round and have a chat to you.' 

And then the GP came round on Wednesday, and she'd been born on the Friday, and had a look at her. And she said, my GP said to me, 'How does she seem to you?' And I said, "Well, you know, I think she's got Down's syndrome," and she said "Oh, so do we." So, 'Right, okay. Perhaps somebody could have mentioned it before' - that's what you thought. She said, 'Oh well, that's what we think', but she said, 'I'm looking at her. I don't know anything about it. You need to go to hospital.' 

So we went to hospital that day to see a paediatrician. And the paediatrician said, "Oh yes, she's" - you know there's a list, isn't there, of all these physical things that they're supposed to have. And she was saying, "Oh, she's got this", and my husband said, "Yeah, but I've got that." And, you know, 'She's got this physical attribute, and that, and the other.' 

So in the end they took some bloods, and we got the results back, I think, a week after that, so two weeks after she was born we got the diag-, and they phoned me up at home and told me the diagnosis over the phone.
 

The delay in diagnosis and having a home delivery meant they got to know their daughter as a person first and had time to adjust gradually.

She was born on the Friday, and my GP came out on the Wednesday, and they'd obviously been talking about her, because of what she said. They'd obviously said, 'Oh' - I suppose they waited for her to have her checks on Sunday. But I'm not sorry, absolutely not sorry, about the way they handled it. A lot of people have said to me, 'Oh, how awful, you know. You were kept waiting. They didn't tell you what they thought.' 

But in a way, you know, I feel we've been really lucky. One, because I had her at home, and I think the experience of having a disabled child at home is a lot different from having one in hospital, and - so I understand from people who have had children with Down's syndrome in hospital. 

And the other thing is, yes, we didn't get a diagnosis for two weeks, but in a way that helped us to get to know her, and see her as a person in her own right, and then see her as a person or a child, but with Down's syndrome, rather than straight away having a child with Down's syndrome, and that's what she was. 

Whereas, you know, by the time we had the diagnosis she was our baby, she was part of our family and it was just - do you know what I mean? It was, we had a chance to get to know her. And in the same way that people would say, 'Oh, I don't want a child with this. I don't think' - in the way that we did - 'I can't cope with a child that's got this or that', we had her, and she did have that. But because we had her and got to know her, then 'She had that - well, you've just got to get on with it.' 

And it didn't seem such a big deal, I think, as if I'd, say, for example, if I'd gone into hospital, which I didn't want to do anyway, so that would have been one trauma. And then we'd have had the thing that's happened to most people who go into hospital. 

They're diagnosed as soon as they're born, because they're - I suppose the consultants on the ward have seen a lot more of it and are a lot more confident to say, 'Yeah, we'll do the blood test but your' - what they tend to say is, don't they, 'We'll do the blood test, but your baby's got Down's syndrome. But we'll do it just to make sure, but this is a fact of life.' 

And I think with all the trauma of even a straightforward birth, and then having that loaded straight on you, I don't, I think that would have been, I think I'd have felt very differently about it.
 

She felt screening was pointless as it could not give a definite diagnosis. She was concerned about pressure to have perfect babies.

Yes, from my point of view, my feeling about screening is that it's pointless. Because I think if somebody wants to know if their child is carrying something that can be tested for, then they should have CVS or amnio. They should be tested, and they will know one way or the other. 

Screening, I think, either gives people false fears, or it gives them false hope that everything will be all right. And people are aware of this, but I don't think people think it through, that even if you have tests, and your child does not have Down's syndrome or spina bifida, it doesn't stop your child from being autistic, it doesn't stop your child from having some kind of brain damage. 

It, there are so many things that - and some, a lot of them are a lot more serious, potentially, and life-threatening, than Down's syndrome, which is not life-threatening. It's just a condition, it's just an alternative way of life, if you like. But you can't test for those. I think the problem is that we've got our - society's now about choice, isn't it? You can choose this, you can choose that. Everything's all about choice, like it's a big shopping spree, and there's some things that you can't choose. 

But because we are inundated with this idea of choice, we feel now, I think people feel now, that you can choose to have a perfect baby, but you can't. And it's very, very hard to - and because that is the kind of, the society that we live in, then when you don't have the perfect baby I think it makes it even harder. Whereas probably forty or fifty years ago, it was - I mean, it wasn't handled well then, either, but there wasn't this expectation that everything would be fine, because we've had this test and that test. 

But I certainly would feel, with the screening - so that's nuchal fold and the scans - that they're not diagnostic, and therefore, as I know myself, just because you have a low risk, a one in two thousand or a one in five thousand risk it doesn't mean you're not going to be that one person. And in that case statistics are, they're pointless. They have no meaning, because if you are that one person it doesn't matter. It doesn't matter.
 

Having another baby with Down's syndrome would have major implications for the family, but it would be difficult to contemplate termination. Media images of Down's syndrome are negative and inaccurate.

I don't know if you're planning any more?

No, I don't think we are, and I think one of the reasons is that I don't particularly want to have to make any decisions, which is awful, really, isn't it? And because I know I'm more at risk, and it's a hard thing, because you think, 'Well, I know I'm more at risk', and if you were to have another child you would want another child partly to help my eldest child to have somebody to talk to about her when we're gone. 

Because he will automatically have to take - I'm not saying he'll have to care for her, because I don't think he will - but he will have to have some kind of involvement in her life, for as long as she lives, and you think, 'Oh, well, another child might help.' But, so then, if you're saying that, what you're saying is, 'I don't want another child with a problem.' 

But then, of course, you think, 'Well, I'm more likely to have another child with Down's syndrome now, statistically, so what would I do? Would I have tests? And if I had tests, would I have a termination? If I've just said, 'Well, I don't want another child with a disability, because I want somebody who can help him.' And if I have a termination, what am I saying about the child that I've got?' 

And I suppose, in a way, I just find it easier to think, 'Right, well, let's just not go there.' Which might be a bit of a cowardly thing to do, but I think as well, I think I would find it nearly impossible to go through a termination, for a child which I know would be a delightful child, who would lead a very fulfilling life, and would be very happy in themselves. But it's a very big issue, very big issue. 

And I don't, I would always, I really, I would always, always support somebody who chose to have a termination. I think it's - and I think if they feel it's the right thing for them, they absolutely, that's absolutely right. 

But at the same time I think that if somebody feels that they can't - even if - it's very hard because I think there's a lot of pressure on people to do one thing or the other, by various people, and I think it's almost an impossible choice to make. I don't know how -  and I mean, I'm saying that, and I've got knowledge of, of having a child with a disability, which is not, it's not - especially Down's syndrome is - the media make it out to be - and that's what everybody thinks about, when you're tested for things, 'Oh, Down's syndrome', and spina bifida, I suppose.

But to, probably people are - I don't know - but my perception certainly of how I felt was people are less frightened of spina bifida, because it tends to be more of a physical disability. And again, I think a lot of people are - this mental disability is a, it's a big fear with people. 

Because people see pictures of people with Down's syndrome who've been institutionalised, because that's what used to happen to them, who are in their forties and fifties, who shuffle along, looking down at the floor, don't really communicate, and people don't realise it's the institutionalism that's done that to them, and not the fact that they've got Down's syndrome.
 

When people are told their baby will have Down's syndrome, they need more balanced information about life with the condition.

Yeah, I think at the moment people are not given a balanced picture. That's my experience from people I know who have had tests recently. I think the, as you say, the assumption is that they will want to have a termination, and for many people that may be true, but my personal concern is that people are not given enough information. 

And by that, I think it's fair that a consultant should say, if you have, 'Your baby has Down's syndrome or whatever, and these are the things that may or may not happen to them.' 

The problem I have with that is that when you have a normal baby the consultant doesn't say to you when it's born, 'You have got a normal baby. When they're two they might get meningitis and have brain damage. They might be run over in a car acc-, you know, they might become pregnant as teenagers and then become a drug addict.' 

People do not say this to you, and these things are all traumatic and awful things to happen to anybody, but nobody sits you down, when your baby is normal [gestures inverted commas], and says these things to you, which are just as likely to happen. 

But I think it's fair to outline that there are some extra health risks with having a child with Down's syndrome, and that the heart problem is, it's the major one now. I think - and there's the risk, a slightly higher risk of childhood leukaemias. Certainly the infection side of things I don't think is such an issue now. I don't think as many children are dying through infections now, because of antibiotics and improvements in medical care, I think.

The problem is, I suppose, it'd be quite, it's quite difficult to get a balanced picture, because, if somebody asked me, who'd had a test, because I know what information they probably will have got from the consultant, I would probably be more positive about it, because I feel I'd have to balance - do you understand what I mean? I have to balance that view, whereas I suppose what you really want is you really, it would be really nice if you could find somebody who could just tell it like it is, you know - the negatives and the positives. 

And you might think as a parent who, you know, that you were able to do that, but I think you've got a lot of, you're carrying a lot of baggage with you, as a parent, and there is a certain amount of, you know, 'I want to make my, people feel that my daughter's life is worthwhile, and, you know, I really love her' and everything. So I think there is, there would be an element to that in it, and I think that's difficult, and I don't see, I can't see a way round that.
 

Discovering her daughter had Down's syndrome meant she had to change career plans. Caring for her is hard work, but some of the problems are created by social attitudes.

It's had a big impact on my life, because after I had my second child I was planning to go back and retrain as a midwife, and when she was born, obviously that wasn't going to happen, because of the amount of extra support she needed, so I couldn't do that. 

But actually what's happened is I've ended up training to be a teacher for the National Childbirth Trust, who I was very involved with anyway, and that has been a very positive thing, because I've really enjoyed it, it's very flexible, fits in with the children, a lot better than midwifery would have done, so that has been a very positive thing. 

My time is - my life is very structured, because we have therapy - speech therapy, physiotherapy, play therapy every week, plus hospital visits for this, that and the other. And so you have very little what I would call Tumble Tots time, if you know what I mean. The time when you might go to Tumble Tots, or go round a friend's, and we don't really have a lot of space for that, and - which is the kind of lifestyle I had with my son, and in a way I think that's a shame, for her as much as anything.

Nothing is straight forward with a child with a disability. There are always - you almost have to ask permission to do the things that other people and other children take for granted, and that's not the fault of the disability, that's society's fault. I think - things are getting better - but I think there's still a really big long way to go. 

And people say to me, 'Oh, will she be able to go to the local school?' 'What do you mean, will she be able to go to the local school? She will go to the local school, because that's her local school, just like any other child's local school.' So it's impacted on me and I'm the one that has to fill in the disability living allowance forms, and, you know. So I suppose - I'm not saying it's been easy for him [husband], because I don't think it has - but I think practically speaking it's really impacted on my, on my life in a very practical way.
 

Having a child with Down's syndrome has been an enriching experience and has changed their view of what is important in life.

I don't know, I think for a lot of people - it's been relatively easy for us I think, in some ways - but I think for some people having a child with a disability is probably very devastating, and I think - but you just don't know until it happens to you how it's going to grab you. 

But the vast majority of people I know have felt that having a child with a disability, specifically a child with Down syndrome, is not a disaster. It's not a disaster. 

And in some ways it enriches your life. And it does, because I think it makes you less worried about things that don't matter, like what level reading scheme your child's on, and it makes you appreciate the things in life that really do matter more. 

And I think actually that makes you a lot more contented, because you're not constantly chasing things that, as soon as you get, them feel empty, like, you know, new cars, or better this or better that, because you, it really does concentrate your mind on what, what is important.

And that sounds really twee, doesn't it? But it's true. And I think everybody, whether their experience is good or bad, would say that it really concentrates your mind on what is the really, what are the really important things are in life. 

And also it's, I like the fact that everybody knows us, that she is and we as a family are sort of almost like little mini-celebrities, because we're the only - she's the only person with Down syndrome in the town, and people know her. And we go about, and it's like, 'Hello, hello.' 

And because she's very social and outgoing she is, she's the, the clich' child with Down syndrome, very open, very friendly, very happy and smiley, with a very stubborn streak. She's - I don't like the clich', but I'm afraid she fits it, unfortunately. She's very, she, she touches people - and in a way I like that, and I think in a way, really, if that's what she can do in her life, is to touch people and make people think about assumptions that they may or may not have. 

And I know this from a lot of my friends who've said, oh, that they'd felt devastated when I'd had her, devastated. But that now, I had a friend who said to me, 'I can't believe she's so happy in herself and she's developing' - not, she's not developing normally, but developing at her own pace. And she said, 'I can't believe that you could ever think about not having a child like that, when I see what she's like now.' 

But it's easy to say that when you see what she's like now, and of course I don't know what the future holds. We don't know what the future holds. And you don't, you just don't know, do you?